The Signs of Autism...

A while back, a poster showing the “signs of autism” was brought to my attention.  It was clearly written from a non autistic person’s point of view, was extremely pathologizing and negative.   I “fixed” the poster with language that was more supportive and reframed the “behaviors” shown in a more understanding and accepting way.   My friends at Autism & Neurodiversity in the Classroom (an awesome resource, you should check them out!) posted the two images side by side to show that the way we talk about autism really does matter!  

I wanted to create a resource that people could share to counter these types of messages about autism, and I finally did!  This Neurodivergent Narwhal poster will be available in my redbubble store if you’d like to purchase it to support the library.  If you e-mail the library at edwileyautismacceptance@gmail.com, I can send you a free pdf of the poster to print and use as well!

 

( I apologize for the lack of image descriptions, I am working on that, but it’s something that is really difficult for me to do!  Thanks for understanding!)

My Kid is NOT a Brat, But Maybe You're Kind of An Asshole

Recently, a parenting article has been going around the interwebs and popping up on my Facebook feed.   The article talks about all the ways that some parents coddle and make their children into “brats”  by horrible, abusive things such as “wanting them to be happy” and “asking them what they want for dinner.”  

So, first I want to address the inherent ableism in this article.  Because it is incredibly ableist to assume that all children have the same physical, developmental and cognitive abilities and executive functioning skills that this list seems to assume that they do.  Secondly, parenting is not us versus them.  People who have that mentality are going to think that kids are “brats” because they don’t see children as actual people with thoughts, feelings, needs and desires, preferences and wants of their own.  And guess what?  Children have all those things just like adults do.  On top of that, they do not have the skills and knowledge to always communicate those thoughts the way that adults do. If they did, THEY WOULD NOT NEED PARENTS.  

The first item on the “Brat List” is “we negotiate.”

Yeah, we do negotiate.  It’s called collaborative problem solving and it’s actually empowering to allow kids to find mutually beneficial solutions, learn to compromise, and build loving, supportive and respectful relationships with their parents.   Some children, especially children who are naturally anxious need to know that we can be flexible and so can they.  And teaching flexibility is best done by modeling those same things in your own actions, words and deeds.   I wouldn’t bark orders at my friend or my spouse, so I am not going to do it to my kid.  My child is a human being and he deserves respect too.  

The second item on the list is “we clean his room”.

I do not clean my son’s room, but he does have a hard time with executive functioning, organizing and motor planning.  We’re both autistic, so that sometimes comes with the territory.  What I do is to help him when a task seems so overwhelming.  We break it down, we make some lists and we figure out a way to do it that isn’t a battle because in the grand scheme of things, toys on the floor and a messy pajama drawer are not a big fucking deal.  

“we carry the backpack”

Why the fuck do you care who carries my kids backpack?  Do you know my child’s medical needs?  Not all disabilities are visible and my child has a physical disability that makes it hard for him to do some of the things that other kids can do easily.  When his backpack gets too heavy for him, I will help him if I can.  Even if he did not have a disability that impacts his ability to sometimes do these things, I would still help him if he asked for help.   If I was walking with my spouse and he said “this is getting too heavy for me…”  My response would not be to tell him to fuck off and stop acting entitled.  Children don’t deserve to be treated like shit just because they are littler than you and have no power.  

Perhaps one of the shittiest and most annoying things on this list is “we ask them what they want for dinner”.  

Okay, put aside the fact that some people (and again, “people” includes “children” because children are people! Radical concept!) have very disabling sensory issues with food.   Let’s just forget about that incredibly ableist assumption that any kid should be able to eat the food you give them.  It’s just a plain fucked up thing to do to ANY kid.  Would you like it if you had no say in what you eat?  Would you think it’s okay to be forced to eat something just because your mom or dad picked it out?  You don’t even have to cook two dinners (though that is something that I often do happily because I like to cook).  It’s not that hard to just let a kid make a sandwich instead of being forced to eat food they do not like just because you’re a power tripping bully.

Another incredibly ableist point on this list is “we make excuses for bad behavior or bad grades.”  

Behavior is communication. ALWAYS.  All the time, every day.  

And you know what?  I don’t always “behave” well.  I get annoyed, pissed off, upset, have a crappy attitude all the time when I am having a bad day.  Or I am tired.  Or I am overwhelmed.  Why don’t kids get to have that too?  What about children makes us think that they must always be pleasant, well behaved, compliant and obedient without question?  Why aren’t kids allowed to experience the full spectrum of human emotion?  They are not robots.  I don’t know about anyone else, but I am proudly raising a noncompliant child who questions authority and knows his worth.   “Behaving” according to ableist standards is not a priority for either of us

And grades?  There are plenty of reasons for not having good grades.  Learning disabilities, hostile sensory environments, children being herded like cattle and only taught to repeat facts instead of actively learning, exploring and engaging.  There are a number of reasons for not having good grades, including the fact that as humans, our learning and communication styles are wide and diverse…..and these are not excuses, they are a way to understand how to support and accommodate each other.  

“we argue with the teacher and the coach”

Adults are not always right.  They just aren’t.  

And for parents of neurodivergent and otherwise disabled kids, not  having to argue  with the adults who are supposed to work with our children is a rare thing indeed.  

As a disabled, autistic child, here is what adult teachers and coaches did to me:

• Allowed other children to bully me relentlessly because “it builds character”  K-12
• Left me under the stairs in the basement for an entire day while I screamed and cried because my stimming was “disruptive”  2nd Grade
• Assigned “friends” to “manage” me instead of thinking that I had any worth or value as a friend on my own.  5th Grade
• Made me vomit on the gym floor in front of my class because I couldn’t “use my words” even though they knew I needed to go to the nurse. 7th Grade
• Called me “lazy”, “stupid”, “r*******”, and openly mocked the way that I talked in front of other kids.  K-12
  

Those are some of the things that my mother had to “argue” about with my teachers.  Every single one of those teachers said I was just a “brat”.  Every. Single. One.   And one of the biggest reasons that we became an unschooling family is because I found out that not much has changed for developmentally disabled kids today.  They are still called “lazy” and “brats” and accused of using their disability as “an excuse”.   

Calling kids  “brats”, forcing them to eat things they hate, not making accommodations for the fact that we are not all on the same developmental path, these things do not “build character”.   They cause anxiety and create a lack of trust because the child’s needs are not respected.  My child is not a “brat” because I want to build a relationship with him based on mutual respect and connection.  My child is not a “brat” because I want to empower him to make choices, to find solutions, to be creative and to think critically.   Non compliance is not bad behavior. It’s human behavior.  It’s what builds strong people who know their value and in turn can see the value in others.  

Calling a child names because they don’t do what you want them to do is not good parenting or good humaning. It’s what bullies do and I refuse to be my child’s bully.  

No, my kid is not a brat.  He’s a human being who has good days and bad days and is doing the best he can to navigate this world, in spite of people who think that his youth and disabilities are just “excuses” when he does not buy into your particular line of bullshit.

My kid is not a brat, but if you think it’s okay to call children names for daring to have emotions, needs, and wanting respect, maybe it just means you’re kind of an asshole.

image: green/blue textured background with black text that reads: "My kid is not a brat, but if you think it's okay to call children names for daring to have emotions, needs and wanting respect, maybe it just means you're kind of an asshole."

Behavior Plan for Autism Professionals

My Behavior Plan for Parents was pretty popular and I have had requests from a lot of parents to do a similar plan for teachers, professionals and therapists who work with Autistic children. You can find a printable copy of this plan here.

This is a Behavior Plan for Professionals, Teachers & Therapists that are working with my disabled/autistic child.  Signing this behavior plan means that you will always put the dignity, autonomy, and respect for the disabled child above buying into the dominant narrative of tragedy or the belief that autism is something that the Autistic person is doing to you.     

• I will look at each child as an individual as we celebrate their strengths and support them in the areas that challenge them.  
• I will support them by teaching self advocacy skills and in helping them find accommodations that work for them and that respect their autonomy.
• I will throw out the myth of a “developmental window” and acknowledge that every child will grow and learn in their own time, in their own way with my patience, guidance and nurturing.
• All of my interactions with the children I work with will be based on mutual respect, not on enforcing my authority.
• I will look at every therapeutic approach with a critical eye.  I will ask myself what is the desired outcome?   Am I advocating respectful supports or am I prioritizing compliance and indistinguishability?  It is not my job to “fix” because children are not broken.  
• I will research the long term effects on the autistic person’s self esteem, trauma responses and mental health when  they are subjected to therapeutic approaches such as ABA that value compliance and indistinguishability.  I will gather this information by listening to actually autistic people.
• I will embrace the neurodiversity paradigm and celebrate each child as a valuable part of the wide and diverse spectrum of humanity.
• I will learn about the social model of disability and confront ableism when I see it.  I will learn about the disability and autistic rights movements and use my privilege to further the cause.
• I will learn about Autistic culture and find Autistic friends, not just for the children I work with but for me as well.  I will  promote acceptance and lead by my example.
• I will recognize that autism is an integral part of who the children I work with are and it shapes how they view, process and experience this world. I will value every part of the children I work with.  I will never teach them shame  or internalized ableism.  
• I will always presume competence in every child that I work with.
• I understand that communication is more than speech and I will value all communication in its many forms.  I will not prioritize speaking as the only valid type of communication.
• I will not attempt to interpret, prevent or stop certain behaviors such as stimming based on my non-autistic experiences, but will instead attempt to understand the function and purpose it serves for the autistic person.   Sometimes, I may not understand, and that is never a good reason to attempt to stop or prevent it.
• I will recognize that autistic children can learn skills just like their typically developing peers and friends.  They do not need a separate, segregated classroom to be taught in ways that dehumanize and stigmatize them.  If the autistic child needs more time to learn something than typically developing children, that does not mean that they will never learn these skills.  It just means they learn differently and I will accommodate and support that.
• I will not remove supports once the autistic child is successful with them.  I will recognize that this is cruel and makes very little sense as autism is a lifelong disability for which the person will always need supports and accommodations….even as the support needs change and they master new skills.  I cannot remove all supports and expect a disabled person to thrive without them.
• I will likely make mistakes along the way because I am not perfect, but when I know better, I will be able to do better. I will remember that working with autistic or other neurodivergent children means supporting them, accepting them, valuing them for the unique and wonderful people they are.

Image: white text reads: 

https://goo.gl/Dr3m7a

Behavior Plan for Teachers, Therapists & Professionasl who work with Autistic Children.   Text is on red and white checkered background.

Facebook Doesn't Care About Marginalized Voices

  
So, for the second time, I am in Facebook jail.  The first time I was blocked by Facebook for 24 hours was when someone left a string of racist comments on AWN's facebook page on a post about the intersections of autism, disability and race and the #BlackLivesMatter movement.   Acting as the page, I asked the person to stop and when they repeatedly ignored me, I banned them from commenting on our page.   Naturally, they reported me to Facebook and Facebook decided that it was more embarrassing for that person to have me tell them to stop being a racist than it was for the racist to actually say and do racist things.  

Unfortunately, it is a common occurrence that I see in groups and spaces that are dedicated to radical activism or social justice.  Those who troll the page are able to claim that being held to standards of human decency is "oppressive" and being called out on their problematic and shitty behavior is somehow a worse offense than it is to actually be a raging asshole.  

And I do understand that I cannot prevent people from being human shit stains.  However, in the intentional communities that I help to run, I do not have to allow these comments.  Creating safe, inclusive spaces for marginalized people is somehow seen as some sort of SJW oppression even though that is not how oppression works.   Generally, in the communities that I run that are dedicated to disability justice and autistic rights, this is how it goes:

Person leaves ableist/racist/transphobic/bigoted comment

Page (me) asks them to stop and refers them to community guidelines.

Person complains about how I am violating their First Amendment Right to be a flaming shitlord.  

Page (me) explains that I gave them a chance, that free speech does not free you from the consequences of your speech and goodbye.

Person reports me to Facebook for their damaged hurtfeels.

Facebook bans me.

This time, when I was blocked from Facebook for three days, it was due to an incident on the Boycott Autism Speaks Facebook page, which I moderate. I had reposted our community guidelines and the intentions of our community from our website, as we do from time to time to remind people what the Boycott Movement is about.

An Autistic person came to the page to say they wanted a cure. Okay, that is their business but that is

1. Off topic, and

2. Our page embraces the neurodiversity paradigm and we are clear about that.  

Another BAS moderator simply reminded them that this was an intentional community and not to go there.

Instead of listening, the commenter just kept going and this resulted in other people joining in the conversation.  We asked them to stop.  MOST of the commenters respected this.   The original commenter did not, and was removed.  Then a parent decided to put her two cents in.  Because as you all know, disability and autism are not a part of us, but just a terrible thing we do to our families by existing.  (Sorry, I am using sarcasm).

The parent went into great detail about her child, including talking about his toileting issues, his meltdowns, his self injurious behaviors, and generally saying terrible things that completely violated his privacy and dignity.  I will not copy her comments here because SOMEBODY has to give a damn about her kid.

As the page, I commented with this:  

MODERATOR NOTE: UNDER NO CIRCUMSTANCES ARE WE ALLOWING COMMENTS THAT VIOLATE THE PRIVACY AND DIGNITY OF AUTISTIC CHILDREN! This is an intentional community and is not a space to vent about your hard time parenting. If you want parenting advice, please go to our friends at Parenting Autistic Children with Love & Acceptance or Respectfully Connected !!!!!

To which the parent responded:

My sons "toileting issues" are a direct symptom of his autism. If, especially today April 2nd, I am not to speak of these, on a site directed at autism discussion, because it makes you uncomfortable? Then please, do not pretend to be about either awareness or acceptance. You can choose to ignore that part of autism but you don't get to dictate what I discuss. I work fiercely everyday so that autism alone does not define my son, but the hours and energy I exert to do so, means it defines ME. I have earned my right to speak on the subject, the ENTIRE subject, without censorship or judgement from you.

Okay, first of all, toileting issues are not a symptom of autism.  Secondly, BAS is not about "autism awareness".  In fact, we explicitly say that we find "awareness" to be harmful and disrespectful to actually autistic people.   Thirdly, in an intentional community that I maintain, I certainly do get to dictate what is discussed.    We value the civil rights, dignity and humanity of autistic people, including autistic children. Violating their privacy is in direct opposition to those goals.  Fourth, autism does not define you as a parent.  You are co-opting your child's diagnosis at the same time that you are saying it can't define him and that is gross and shitty.  You absolutely have the right to speak about your experience parenting as long as it does not violate the privacy, humanity and dignity of your child.  If speaking your truth involves throwing your own child under the bus for sympathy, that is never okay.  Lastly, I have the right to judge.  Judging is what makes me human and allows me to know the difference between right and wrong.  I also have the right to censor your ableist comments in a space that was created to be a safe haven for autistic people.  

After this comment, I informed the person that they had been removed for repeatedly violating our guidelines and the dignity of their child.  My mistake was in not double checking to make sure that her name was not “tagged” with a link to her profile.  As soon as I realized that it had, I removed the tag, but left my comment.   And that right there was what got me banned from Facebook.   

This is what I said to Facebook when they informed me of the ban:

The comment that you blocked me for was after repeated attempts to stop that person from posting things that were humiliating and abusive about her disabled child. Is it okay for a parent to post about their child's toileting habits as long as the kid is disabled?  I understand the person was embarrassed about what I wrote, I know because she continues to harass me via e-mail.  Well, how did her child feel?  And I did not intend to tag her in the comment but you guys are the ones who made it so that tags start auto completing when you type a name.  As soon as she asked that the tag be removed, and I realized that I had done that I removed it and I am still banned.  Meanwhile, it's okay for her to post about her child's private moments and bathroom habits in a public forum because embarrassing disabled kids is okay?  But asking someone to STOP doing that in a community that I moderate that is set up on the principles of disability rights is NOT okay?  
The last time I was blocked from Facebook was when I asked someone to stop saying racist things in another community that I moderate.  That person reported me but her racist comments stood.  
It seems to me that Facebook is saying that being a racist or an ableist is okay, but someone asking you to stop is not.  I understand that people are free to be racists and ableist bigots.  And I can't stop anyone from publicly humiliating their children on their own timelines....but these comments were in intentional communities that we try to run as safe spaces for marginalized people.  Should I allow every bigot to come in there and say what they want?  That is not making these spaces safe for those of us who are not white, straight, cis, neurotypical or nondisabled.    

So, I want to remind you all that it is perfectly fine to humiliate your disabled children on Facebook, but it is not okay for someone to tell you that it’s wrong.    And based on my previous Facebook ban, it is completely acceptable to do and say racist things but if you ask someone to not, you will be banned.   

The person who reported me to Facebook because she was embarrassed that I said her name in a comment continued to e-mail me until I blocked her.   I may have mentioned that she has no right to claim embarrassment when she is posting hugely embarrassing things about her own son in public forums.   I wonder if anyone has thought to ask him how he feels about having private, humiliating details about his struggles and medical history put on Facebook for the entire world to see.

Holy Hypocrite, Batman!  

But these things are fine to post on Facebook.  Because children don’t deserve rights, disabled people don’t deserve dignity and marginalized people should not expect to be able to stand up for their own humanity.   

How To Be A "Self Advocate" That Disability Organizations Will Listen To

How to be a "Self Advocate" That Disability Organizations Will Listen To:

1. Be a Self Narrating Zoo Exhibit!

No question should be too invasive or offensive. You don't deserve dignity! Your purpose is to protect the feels of non-disabled people at all costs and if that involves talking about your toilet habits, well god damn it, you're going to do that to appease the feels! THE NONDISABLED FEELS ARE OF UTMOST IMPORTANCE. THAT IS WHAT WE ARE HERE FOR!

2. Be Inspirational As EFF!

Did you eat breakfast this morning? HOW INSPIRING! You did a thing and you did it while disabled so it's like you double did the thing with sparkles and rainbows and glitter and shit. I hope you did it smiling because even if things are harder for you, you have to overcome that disability like a fucking boss. Even if you don't want to "overcome", you're gonna overcome because pointing out ableism and the ways that society devalues disabled lives is a total bummer and it's super negative and you want to be so god damn positive that it makes Mary Fucking Poppins look like she has clinical depression.

3. Stop Pointing Out Barriers to Access!

Did you not get the memo about being inspiring and positive? Pointing out that events, conferences, etc put on by disability organizations are not accessible to actual disabled people is just going to harsh the mellow of nondisabled people who are just trying to be our helping helpers! They're doing an autism "awareness" event in a crowded venue with florescent lighting and loud ass "professionals" talking about us,without us? Who cares if they call us a burden and talk about how much we cost? Put on some noise cancelling headphones and suck it up, it's not about YOU, it's about their FEELS. (see #1).

4. Embrace Being Tokenized!

Did you think your lived experience as a Disabled person means more than the "expertise" of professionals, parents or anyone who makes money off of us without us? HAHAHAHAHAHAHAHA! Think again, because it doesn't. And if you want to complain about it, please see #1 and #2. Because you are not minding their feels if you want to be taken seriously and you are not being very inspiring at all.

5. Do Not Be Proud!

You can't "overcome" your disability if you're proud of who you are. You can't tell inspiring stories if you're more concerned with the civil rights, dignity and autonomy of Disabled People. If you're proud, you might expect to be treated like a human being who is equal and deserving of respect. We can't have that!

6. Always Be Willing To Throw Other Disabled People Under the Bus!

Non-disabled people LOVE functioning labels. It's almost pathological how they want to separate those who deserve rights and those who don't. If you want to be taken seriously and you have accomplished not being proud, you've got to make sure that you are separating yourself from other disabled people who may have higher support needs. Talking about how we are all interdependent is kind of a bring down, so don't do that. Talk about how "independent" you are a lot and how "smart" you are as if those things somehow indicate being a better person who is more worthy of human rights.

7. Don't Expect to Get Paid!

Payment is for the "experts", which if you'll refer to Rule # 4, you'd know that these things just aren't about us. We're just along for the ride! They are doing us a real solid by including us and letting us work, write, speak and educate others for FREE. I realize that the joy of helping others isn't putting food on your table, and that disabled adults disproportionately are suffering in poverty and struggle with homelessness but getting paid is probably going to veer into hurtfeels territory, so we should not hope for actual cash money.

8. Complain Often About How Activists "Divide" The Community!

Make sure that others know that the issue is not barriers to access, denial of human rights and dignity, ableism or anything that they or society are doing to disabled people. The problem is CLEARLY those who bring attention to these issues and hurt the feels of the non-disabled. Obviously, they did not see Rule # 1 about the feels minding. They are just a bunch of trouble makers who need to be put in their place and stop being such Debbie Downers about it all, am I right? They'll get their rights when our helping helpers decide it's time. I mean, the helping helpers have our best interests in mind or else they wouldn't just give you so many opportunities to feel terrible about yourself!

Image: Green background with white text outlined in black that reads: 

How to be a "Self Advocate" That Disability Organizations Will Listen To!

8 Guidelines Guaranteed Not To Piss Anybody Off & Maintain The Status Quo 

I Believe You

The first time that someone believed me about why I am unable to drive a car was actually fairly recently.   It was a few years ago when I was commenting on a thread on Mama Be Good's Facebook Page.   To be quite honest, I do not remember what the thread was about now, but I had commented about how I felt unsafe driving for lots of reasons:
terrible visual processing
anxiety
poor executive functioning
poor depth perception
inability to multitask
VERY poor sense of direction (I get lost often and disoriented easily)
tendency to hyperfocus (which can be great at times, but not when you need to pay attention to multiple things on the road when you are driving)

I was just venting, actually but when I got a response from the page just telling me that I was doing a good thing, trusting my limits and making safe choices and should be commended for that, I can't even begin to describe how that felt.

I am forty years old and for the first time in my life someone believed me. They didn't ask me to explain all the reasons (though I did because I was anxious about not being believed).  They didn't tell me to try harder to be less anxious (ignoring all the other reasons that driving is unsafe for me). Someone believed me  and it felt like such a huge relief.   I am pretty sure that I cried all day.

Maybe I wasn't selfish (as others had called me).  Maybe I was not "making excuses", but actually listening to myself and recognizing what was best for me (and anyone else on the road).  I wasn't just asking for people to "coddle" me.   I wasn't pretending, or weak, or too afraid.  For once, I felt like I wasn't a bad person just because I couldn't drive a car.

That is the power of someone believing you.   For most of my life, I have not been believed.   I think that a lot of Autistic people and those with "invisible" disabilities can relate to this because we are so often told that if we just try harder we can do the thing.  Except sometimes, we can't.  And not being able to do a thing should not be shameful or seen as a weakness.

There are a lot of things that I can do exceptionally well or in my own way. There are a lot of things I will never do.   And that's okay.   If I say that I can't do a thing, please don't make me "prove" it to you.  Please don't ask me a million questions that feel like I'm being interrogated.  Just believe me. Trust in me.  Assume that I know my own limits and I'm not just trying to make everyone around me miserable or put out because of my disabilities or my inability to sometimes do the things that many take for granted.

I'm not a bad person because I can't do the thing.   You are not a bad person if you can't do the thing.  You are not only defined by the things that are hard for you.   If you need help to do it, I believe you.  If you need to do it in a different way, I believe you.  If you can never do it, I believe you.   I trust you that you know yourself best.    You deserve to be believed.

Image: dark purple square.  White text in various fonts reads: You deserve to be believed. White swirly/squiggly lines on top and bottom of text. 

"Charity" That Harms.

Before you support an organization that claims to help disabled people, there are a few questions you should ask yourself:

Does this organization rely on disrespectful attitudes toward disabled people or the tragedy/charity model of disability?   Are they working to address ableism or are they contributing to it?

Does this organization actively include disabled people in the majority of decision making and leadership roles?  Or are disabled people tokenized? Remember: "Nothing About Us, Without Us!"

Are their events/conferences & "awareness" efforts inclusive of and accessible to disabled people? Are they inclusive to people of different socioeconomic, racial or cultural groups?

Does this organization confuse parent support with disability advocacy and disability rights/justice work?  Those are two entirely separate things and while parent support is important, if it is toxic (based on the tragedy/charity model of disability) it is actually harmful to not just the disabled person, but also to their relationship with their families, schools, and communities.

If the goals of this organization are empowerment of disabled people, what are they doing to make sure that happens?

Does this organization rely on "inspiration porn" to make you "feel good" about being a decent human to a disabled person?   Does it use stories about disabled people as props while centering the feelings of the non disabled people around them?

Does the organization spend the majority of their funding on helping disabled people have a better quality of life, more accessible communities, encouraging acceptance and working for disability rights/justice or are they more concerned with eugenics and preventing more disabled people from being born?

Not all "charity" is created equal and before you support an organization (or share certain content on social media, etc), it's important to ask these questions to make sure you are actually supporting disabled people and not just encouraging others to focus on how our disabilities make other people feel.

Image: orange floral patterned background.  Yellow text reads; "Before you support a disability organization, ask yourself: "is this organization working to address ableism or contributing to it?

I'm Not A Hero For Loving You

Recently, I was scrolling through my Facebook feed and a page that I had “liked”, a special education advocacy page, shared this image:

 

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins).  After text is image of small umbrella.

I left this comment:  “ I'm not special or heroic because I love my disabled child. I don't think it feels very good to be the disabled child who people think only a hero can love either.”

The page then responded to me:

“Many people feel many different ways about being the parent of a child with a disability. Not anyway is right, Not anyway is wrong.”

Okay, but your feelings about disability are never more important than the dignity and humanity of your child.  You can feel however you want about disability.   However, we live in world where casual ableism in journalism, the media, among politicians, even advocacy organizations that purport to serve us is so very pervasive, why on earth would you join with those who see us as less than?  Why would you take their side over your child’s?

Imagine what it must be like to see that as a disabled child.  Your parent couldn’t possibly love you without super powers or magic?  What the hell kind of message is that sending?  Do you think that you will help disabled children become accepted, loved, valued when that is how you talk about them?  

I love my kid and I am not a hero.  I face ableism and hate with him every single day because I know that we are a team and I will always fight alongside him against the things that make his life harder.  Who he was born to be, disabled, autistic, that is not a problem.  The problem is how other people look at him as less than, who judge him based on the labels he carries and don’t think those labels could ever possibly be a source of pride for him.   

If you parent a disabled child, you are not a hero.  You are not Captain America (who by the way, was disabled himself).  You are not Batman or Mary Poppins.  You are not the Incredible Hulk (An incredibly inappropriate and frightening comparison given the amount of abuse that disabled people experience from parents and caregivers.)   You are a person parenting a child that deserves respect. A child who deserves to be loved for exactly who they are because you see the value and beauty in them. Just like any parent should do. Your child's disability does not exempt you from that. Because your disabled child is beautiful and valuable and amazing exactly as they are.  They need to hear that. They need to KNOW that.

I shouldn’t have to tell my child that I am not a hero for loving him.  But I do.  Because he sees images like this and it hurts him.   So, I sit him down and tell him that picture….one from a page of an organization that claims that they want to work for his civil rights is dead wrong.  I am not a hero.  I am just an incredibly lucky human who won the kid lottery by getting the privilege of raising him.  

The truth is that my child is a hero for putting up with bullshit like that every single day and still managing to be proud of the amazing, autistic, disabled person he is.   It’s not an easy task in this world.  

Also, here, I fixed it for you:

(image:  Cloudy/blue sky background with blue text that reads: “Special Needs parents are the equivalent of Batman, Captain America and the Incredible Hulk combined with a side of Mary Poppins text is struck through with red lines.  After text is image of small umbrella. Alternate text reads: Parents of Disabled kids dont' deserve a cookie just for doing their job.).  

What I Want The Entire Internet to Know About What It's Like To Be Married to a Non-Disabled Person:

This is what it would look like if The Mighty published essays about those of us who live with "non-disability".   It's ridiculous and offensive, but when we do it to disabled people, it's okay? 

I don't think so.   

Here is my "The Mighty" style essay about living with non-disability.:

Image: dark purple background with green round filigree frame.  Green text inside of frame reads: "It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!"

My spouse isn't disabled, but that doesn't stop him from living his life.  Every day, he is not disabled and he gets up, goes to work, helps out around the house and co-parents our child.  The fact that he doesn't have a disability does not bother my disabled child or myself (who is also disabled).  He goes to work and nobody is inspired by him.  It must be hard to just do the normal, every day things in your life without inspiring people or giving them the feel goods!  

When a disabled person goes to a restaurant and eats a meal alone, you have to constantly be on alert that someone will take your picture or try to join you and then post about how awesome they are on social media. Awareness!  It's so powerful!  My non disabled spouse can go to any restaurant and order food from the menu, sit by himself and not one person will be inspired or "aware" of him.  It must be so hard for him.   But, when you love someone you put up with the fact that they are unable to inspire people for existing or eating food at a place that literally only exists to sell food to people.  

It's sometimes hard on those of us who love him because he just exists and lives his life like a normal person.  When my child and I do the same things, people act like we are shitting rainbows because we're so god damn inspirational.  Not my spouse though!

Nobody accuses him of being "exceptional" or gives him numerous accolades just for occupying the same space as them.  Because my spouse lacks disability, and is an able bodied neurotypical person, the world pretty much caters to him.  He has no need to find creative solutions to the problems encountered by inaccessibility.  He can just go to a place and things just kind of work out for him.   Neat!

It can be hard to live with someone who lacks disability, but we make it work because he has a good attitude about it!  Even though he is non-disabled, he accommodates for it by learning about ableism and not being a colossal fucking asshole to disabled people.